Flowcharting my Dysfunction

So I was writing a letter to my autonomic neurologist in NY tonight and started reflecting on the last week and a half of my trial of Ritalin.

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I have had pretty much all the side effects– extreme nausea, headaches, palpitations, dizziness, jitteriness and chest pain. Which are really just most of my usual symptoms, intensified.

Unfortunately though it’s not helping me stay up. I still get the overwhelming fatigue and  can’t keep my eyes open–only now I can’t sleep and just end up feeling even more agitated and with a more intensified headache. I’m also having trouble sleeping at night. I’m waking up more often. It’s kind of like a continuously jittery/groggy state where I want to sleep but can’t.

I’ve tried cutting the dosage from 10mg to 5mg to 2.5mg and there has been no change in fatigue or intensity of side effects.

The side effects are too immobilizing for me to handle without the benefit of less fatigue. If they were going to have a stimulating affect on me, wouldn’t they had it by now?

This is where we are, in science, as far as I understand:

Narcolepsy is treated by one of two things: a sleep medication or a stimulant.

The theory on sleep medications is that maybe people with narcolepsy don’t sleep well enough, so putting them into a deeper synthetic sleep will make them sleep harder so they won’t feel the need to sleep during the day.

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If sleep medication doesn’t work, stimulants are used to keep patients awake during the day.

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But that’s not how dysautonomia works.

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Dysautonomia means having no control of the automatic functions of your body–including sleep. My body can’t turn the switch either way. Without a trigger, it doesn’t know when to sleep or when to wake up. Automatic dysfunction.

This is how everything is treated with dysautonomia– same goes with digestion. There’s no gauge on motility. I can be going to the bathroom all the time, or not at all. I have to take combating medications in order to keep my body in a regular rhythm.

Same goes for my blood pressure and heart rate. I have to take beta blockers to get my heart rate to calm down and midodrine to get my blood pressure to come up.

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But we haven’t been able to even out my sleeping patterns. Stimulants do not work on me. My body is pretty insistent about sleeping all day and all night. Sleeping pills help me sleep better at night so I’m not waking up every twenty minutes–but stimulants just make me jittery and I still feel the urge to sleep.

 

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